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The Poisoned Well: a history of ME in 20 tweets

July 5, 2022

NOTE: the illness termed “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” or “ME/CFS” by England’s National Institute for Health and Care Excellence (NICE) is the subject of a confusing array of names and a wide variety of case definitions. For the purposes of this blog, it is ME, the complex, multi-systemic neuroimmune disease with which I have lived since 1981. Follow link here for more information about ME and About for more details about me and my work.

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RESOURCE: the historical and political context of ME

The 2021 film “The Tangled Story of ‘ME/CFS’” gives a comprehensive account of the historical and political context of ME in the UK, also referencing the situation in the USA. It is an exploration and analysis of the troubled – and still unresolved – history of ME, as described by fifteen expert researchers, clinicians and advocates. [Full disclosure: I am one of the contributors.]

The film is divided into six segments so is fairly manageable to watch in short sessions rather than all in one go.

To view the film (1 hour 11 minutes) go to this link

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Background: International ME Awareness Day/Month

Thomas Hennessy, Jr was an American advocate who lived with ME, until his premature death in 2013. In 1992, he designated May 12th as International Awareness Day for chronic immunological and neurological diseases, including “ME/CFS”.

2022-06-02 (2)Tom chose May 12th because it was the birthday of Florence Nightingale, who is believed to have become ill with ME following her service in the Crimean War of 1853-1856.

In due course, May 12th became recognised generally as International ME Awareness Day. This was then expanded into May as International ME Awareness Month, during which time additional events and activities take place in the worldwide ME community every year.

In 2022, some groups rebranded May 12th as “World ME Day”. 

The “history of ME in 20 tweets” Twitter thread

On the final day of International ME Awareness month for 2022, I put out a Twitter thread containing 20 tweets. This thread summarises the history of ME and proposes an explanation for why it is still a neglected and stigmatised illness, despite having been documented for nearly a hundred years.

The text of the tweets is below or you can also view it here using using Threadreaderapp. Thanks to @BenDeNevis1 and others on Twitter for that. 

Thread begins (20 tweets): @sajidjavid** @DHSCgovuk @NHSuk Today is the final day of #ME awareness month. Recent developments [the DHSC cross-government (ie. UK-wide) delivery plan for “ME/CFS”] are most welcome. However, it is important that we are reminded of the long and torturous history of this illness & its impact on generations of patients:

#ME as an illness may well have existed for thousands of years – for as long as humans have possessed an evolving immune system. Anecdotal evidence begins to emerge more clearly during the 19th century eg. Florence Nightingale, post-Crimea.

The first documented outbreak of an ME-like illness occurred in 1934 at the Los Angeles County Hospital in California, USA. Since then, many hundreds, if not thousands, of similar incidents have been recorded from all over the world, representing an ongoing public health issue.

Many other notable outbreaks have been documented since 1934, eg. at the Royal Free Hospital in London in 1955/6 when the term “benign myalgic encephalomyelitis” was first coined in The Lancet (“benign” was finally dropped by the WHO in 2019) & at Lake Tahoe, Nevada, USA in 1984.

In 1988 the term “chronic fatigue syndrome/CFS” was substituted for/added to #ME causing widespread confusion/dilution of symptoms (ie +fatigue) which persists to this day. If characterised accurately #ME is NOT about fatigue. Fatigue is a normal response to exertion. #ME is not.

In 2021, the long overdue @NICEComms guideline for “ME/CFS” in England clarified that there is still no accepted diagnostic test, effective treatment or cure available to patients. There is only management of symptoms. After nearly 100 years, how on earth is this possible?

In addition to this, the @NICEComms guideline emphasised that patients have experienced prejudice, disbelief and been stigmatised. For many, this stretches over several decades. In addition to this, I would argue that #ME patients have long been subjected to institutional abuse.

So, in 2022, how have we ended up here? The usual explanations are “challenging illness, lack of funding, lack of research, lack of resources” etc… Yes – but WHY? Sure, it’s a difficult illness to understand/research but so are many others eg. HIV/AIDS, type 1 diabetes, MS etc.

Vigorous campaigning and strong political pressure on behalf of other illnesses eventually generated sufficient political will for increased funding, research & other resources leading to proper recognition and treatments. For HIV/AIDS, this took about 20 years. Not so with #ME.

The problematic nature of #ME meant that it was vulnerable to exploitation by various medical practitioners who adopted the psychosocial & behavioural illness models which became fashionable in the mid-late 20th century. They then translated them into treatments for #ME or “CFS”.

This group developed a highly inappropriate model for #ME based on graded exercise therapy/GET & cognitive behavioural therapy/CBT. GET frequently causes extreme harm to patients. The ME-specific CBT model gaslights patients with: “You’re not really ill, you only think you are”.

This band of psychosocial/psychiatric-led practitioners evolved into a powerful lobby group who, along with their acolytes, developed a damaging and highly toxic culture around #ME and the patient community – particularly in the UK, but elsewhere too.

This toxic culture poisoned the well, thus obstructing urgently-needed progress in biomedical research, as well as preventing the development of appropriate support services and resources for #ME patients, both adults and children.

Professional reputations were built and had to be nurtured and maintained at all costs. The group’s self-serving initiative has been bolstered by many media commentators stretching back over decades, and  more recently with assistance from the @SMC_London  [ie. the Science Media Centre] which was set up in 2002.

As a result, this powerful lobby group came to dominate & control the #ME narrative. This has caused immeasurable reputational damage to the #ME community & further traumatised an already disenfranchised patient population. This damage & trauma has never been properly addressed.

Recap: 1934 ME first documented. 2022 no tests/treatment/cure, minimal research/resources (compare LC), physical harm actively caused to patients over decades (gross negligence), reputational damage to already traumatised international patient community + still no acknowledgment.

As I have already said, in 2015: “Whatever happens next is certainly too late for the millions of patients who have already died during the last eighty years. Most of them never had their illness validated nor were they treated with respect and compassion in their lifetimes”.

Whilst both the recent statements by @sajidjavid** and actions by the #ME orgs are most welcome, this painful history is not being acknowledged on a scale which properly reflects the appalling and now irreparable damage caused to the patient community over the last 50 years.

Acceptance of responsibility by the state is problematic but is the only appropriate & proportionate response to longstanding systemic injustice – Windrush/Thalidomide/contaminated blood products/Hillsborough/Stephen Lawrence… A statutory public inquiry wd be a good first step.

And finally, a reminder of my quote from 2019: “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” valerieeliotsmith.com End of thread. Thank you for reading.

**UPDATE

Eight hours after I published this post, Sajid Javid resigned as Secretary of State at the Department for Health and Social Care (DHSC). Two hours later, Steve Barclay, MP for North East Cambridgeshire, was appointed to replace Sajid Javid.

I doubt this will have a major impact on the DHSC’s “cross-Government delivery plan for ME/CFS”. The plan is being managed by civil servants from the DHSC who will continue regardless of who is running the Department. How successful the plan will turn out to be is another matter. 

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